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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Question for those who achieved remission through modulen IBD


08-05-2013, 12:20 AM   #1
rollinstone
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Question for those who achieved remission through modulen IBD

Just wondering how long it took for you guys to actually go into remission, I'm on day 13 and not really feeling any better, I did for a few days and then the past few nights been really bloated, and had quite a painful, upset stomach. Almost feel as if the flares getting worse, don't know whether or not to hang on or to start pred
08-12-2013, 01:26 PM   #2
Karma
 
Join Date: Mar 2013
Hi Joshuaaa,

I'm on Modulen IBD too - on day 10 - so I'm not far behind.

I felt really good on about day three, but then got diahrrea a couple of times and have been getting it every day since. Bloating and gurgling precede it, and it's always in the afternoon - formed stool in the mornings.

Things I've tried - drinking more slowly, watering down a bit more. No luck.

I don't understand how this stuff can cause diahrrea. My Crohns is in the terminal ileum and the colon. Here's what I think is supposed to happen:

Drink modulen
Absorbed in first few meters of small intestine (hence the drink slowly)
Some waste products move down to colon over time and occasional stool

Hmm. Maybe it's the osmolality and water is being sucked in?!?!
08-12-2013, 02:19 PM   #3
Tesscorm
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My son did six weeks of enteral nutrition to induce remission, however, he also had flagyl through IV for the week he was in the hospital (so not sure how much that affected things). But, he started exclusive EN on the Sunday, came home Tuesday, stayed home from school the remainder of that week but, by the following Monday (one week + plus one day of EN), was back at school and participing in two phys.ed. classes and starting back on his hockey teams. He definitely took the activity at a slower pace (for him), however, was probably at an 'class average' level. The EN (plus flagyl) took away his symptoms almost immediately.

Having said that, he did EN overnight through an NG tube and was allowed only clear fluids during the day (ie gatorade, broth, jello, freezies, etc.). He did have diarrhea the entire six weeks but no real urgency - our dietitien said this was often the case (ie liquid in, liquid out) although, from what I've read here, it doesn't seem all the common???

He may not have felt some of the bloating, etc. you mention as he ingested the formula while sleeping???

His formula was Tolerex (by Nestle).

Joshuaaa - what formula are you using? Some are more broken down (the elemental or semi-elemental) so are easier to digest, provide more bowel rest, etc. Some of these, in drinkable version, would be Peptamin or e028. I have read of some people have difficulty using Boost or Ensure.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-12-2013, 02:32 PM   #4
Floyd10
 
Join Date: May 2013
Location: Derry, Ireland
Can somebody tell me where I can buy these products? I can't find them online
08-12-2013, 02:34 PM   #5
Tesscorm
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We received ours through our hospital drug store but I know some are available at most drug stores, Costco, grocery stores and through Amazon. I think you can order them directly from suppliers as well. Here's a link to Nestle, listing the formulas they produce.


http://www.nestle-nutrition.com/Prod...0-96C8895A0C59
08-12-2013, 04:57 PM   #6
rollinstone
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Hi guys, I'm on modulen ibd but in eatin foods w it now as I started pred, which doesn't actually seem to be helping too much, so it looks like I'm probs headed for remicade
08-12-2013, 09:30 PM   #7
Tesscorm
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My understanding is that for EN to actually induce remission, it must be used exclusively, ie no food. Using EN with food is still beneficial as it provides you with necessary nutrition, but one of the benefits of EN is the bowel rest it allows - if you continue with food, you are eliminating this important benefit.

FWIW, after his six weeks of exclusive EN, my son did supplemental EN for almost two years. He was considered to be in clinical remission (no apparent symptoms) but did not achieve complete biochemical remission (no inflammation). EN seemed to control his crohns and it didn't worsen, but it didn't eliminate all the inflammation. This past February, his GI decided to add remicade. So far, he's done well with remicade and a recent MRE showed significant improvement over his last one.

Have you given EN a try exclusively? But, it's not easy... six weeks of no food is tough.
08-12-2013, 09:57 PM   #8
rollinstone
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Yes, I was on exclusively no food for 14 days, at which point I wasn't seeing any improvements, I figured instead of going downhill I'd try knock the flare on its ass. If I had been improving I would of stuck to it solely, it's better not to let a flare get out of control
08-12-2013, 10:01 PM   #9
rollinstone
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I should also mention I actually started liking the no food thing haha it was easy after the first week, I hope remicade works for me! Glad your son is doing well, hopefully it can get both of us into complete remission and keep us there until there's a cure. Can I get an amen!
08-13-2013, 05:52 AM   #10
Floyd10
 
Join Date: May 2013
Location: Derry, Ireland
We received ours through our hospital drug store but I know some are available at most drug stores, Costco, grocery stores and through Amazon. I think you can order them directly from suppliers as well. Here's a link to Nestle, listing the formulas they produce.


http://www.nestle-nutrition.com/Prod...0-96C8895A0C59
Excuse my ignorance but i'm new to all this stuff, which one would you recommend?
08-13-2013, 07:59 AM   #11
Tesscorm
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Joshuaaa - let's hope, EN or remicade, it works a miracle for you and my son!!!

Floyd10 - if you are doing 'decently' (ie not a lot of inflammation) and are only looking to supplement your diet (to increase your nutritional intake along with your regular diet) or just to replace a few meals when you are not feeling well, probably any of the shakes will do. I think the most popular ones are Boost or Ensure.

But, if you are in the midst of a flare and want to try to use exclusive EN to induce remission or have active inflammation (inflammation can cause malabsorption issues), then you are better off with an elemental or semi-elemental formula, such as Peptamin.

The more broken down the protein, the easier it is to absorb. So, while shakes like Boost can be used for exclusive or supplemental EN, I believe when there is active inflammation, the more elemental formulas will be more helpful. Unfortunately, the more broken down they are, the more unpalatable they are.

This link offers more info

http://www.crohnsforum.com/showthread.php?t=23607

Good luck!
08-18-2013, 10:18 AM   #12
Spooky1
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I still have crohns flares. The Vital and others that I have tried do not help that much, but at least they have all the nutrients in. I can't digest normal food as it just won't break down properly. I also have a distended tummy, gurgling and pain and D.

I hope you find a solution soon, Joshuaa
09-03-2013, 12:52 PM   #13
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This is the first I've really heard of EN. Can you still take your supplements (i.e. Vitamin D, etc) with it? Sorry to sound ignorant but I've never heard of this option.
09-03-2013, 01:51 PM   #14
Tesscorm
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When my son was on exclusive enteral nutrition (formula only, for six weeks), the only supplements he took were krill oil (a type of fish oil) and Calcium+D tablet (this was on the advice by the dietitien who was also overseeing the EEN).

Once he began using enteral nutrition as a supplement (ie half the 'exclusive' amount with a regular diet added back in), his GI or dietitien recommended he supplement his diet with 2000 IU of vitamin D daily - in this case, the 2000 UI was a total of what he received from all sources combined (ie 700 UI from formula PLUS 300 UI from calcium+D tablet PLUS 1000 vitamin D liquid supplement).
09-03-2013, 02:29 PM   #15
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Thank you. I'm currently taking 2000 IU of Vitamin D along with a multivitamin and Fish Oil. I'm going to try this--at this point I'm willing to try anything. I appreciate the information and I'll research this some more but I'm so glad I found this thread because I seriously had never been told about this.
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